Should I try the Cold Cap or go for a wig?

dawgette · December 2017

Hello all!

I start chemo on 1/3/18 and am struggling with whether to attempt to keep some hair by cold capping or just let it go. My treatment includes 4 rounds of AC and 12 rounds of Taxol. In all, 5 months of chemo followed by 7 weeks of radiation. I am in Seattle and I have gone ahead and ordered from Chemo Cold Caps. My cooler is here with all the caps, so maybe I try it during round one and then decide from there, but 16 rounds seems like a lot to try to cold cap through. Maybe if it were 8 or less it would seem more manageable?

I am also finding that dry ice in the pellet form isn't an easy find in Seattle and I am thankful that I have a fiancé who is happy to use his mallet to pulverize some sheets into more of a pellet form. He's also around to cart the cooler to the hospital for me and to help me with the capping.

I have been running thru the pros and cons, but would love to hear if anyone went through 12-16 rounds of chemo and used a cold cap system. I seem to be coming up with more cons than pros, but I already have it so I could just try it or send it back. I'm not opposed to wigs at all and if my treatment is so harsh that I am going to lose a ton of hair anyway, then it seems like a waste of $$, time and a pain.

Would love to hear others experience.

NotBrokenJustBent · December 2017

My MO and second consult mocked the cold caps and told me to stay off the internet. I was also told the hair loss would only be temporary, would grow back and so I chose to save everyone from the time intensive cold caps and the expense of the whole ordeal. I had lovely thick hair with great volume and soft curls prior to chemo. My hair grew in baby fine, straight and straggly and it saddens me as my hair was my best feature. I am truly disgusted by what hangs on my head but I try to consider myself fortunate as some women suffer from permanent alopecia. In hindsight I would not have done chemo or would have done cold caps and iced my hands and feet! I was also told neuropathy would be temporary and icing was a goofy myth. I now see that it is well documented that chemo can change the color and texture of your hair so if you like what you have I would try to preserve and not count on the fact that it will grow back as before.

notinuse · December 2017

Hi there, I am new to this website but I thought I would share my thoughts, however I did not use cold cap therapy. I decided against it as I did a lot of research as I am sure you have too. I was advised I may not lose all my hair with EC or Docetaxol because I "had" so much hair and extremely thick. But I couldn't cope with the thought that there was still a high chance of me losing my hair and having it come out in clumps. So 2 weeks prior to chemo I walked into a salon and had it all shaved off. All 12 inches of my blonde hair. I cried a little but this passed and I felt like I gained some control and beat the chemo to it despite medical staff thinking I wouldn't lose my hair. I had 1 x EC 3 weeks ago, my hair had grown nearly an inch since shaving it off 5 weeks ago (it usually grows an inch a month) and then this last weekend it was coming out fast and furious. However body hair is still there, slow growing but strong.

I decided against CCT because A) the temperature it goes too. The extra time in Chemo Suite and C) There's no guarantees.

I have invested in 2 very good wigs so far. Evanna by Rene of Paris. I have got a Rose Gold one (Blonde) and also the Blue one. Thickness and wave wise, they both resemble by natural hair perfectly. In fact people were confused when I wore them. I don't think its worth you "settling" on wigs. Splash out and feel good.

I hope some people can share their experiences with CCT though, sorry I couldn't.

i'll try to attach a photo of me in one of my wigs...

BellasMomToo · December 2017

I did not cold cap -- just couldn't deal with what would have been a hassle for me. There are several threads on this board about cold caps and lots of photos. Just do a search.

From what I understood from the various threads, cold caps work great for some, but not others. And each person has their own idea of success. One thing that would have bothered me is, it sounds like (some) cold cappers continue to shed for weeks after they finish chemo. I would have found that annoying. (I started to lose my hair 2 weeks after the start of chemo. After about 2 more weeks, 95% of my hair had fallen out, so I shaved off the rest. I no longer had to worry about shedding. )

Good luck with what ever you decide! And good luck with chemo.

Meow13 · December 2017

I would try it. Make sure they are secure on your scalp and keep them cold. If you can save your hair it is worth the effort. See other cold cap threads with photos.

https://community.breastcancer.org/forum/6/topics/...

cindyanne · December 2017

I did not try the cold caps but did consider it. I thought that losing my hair would be the worst part of chemo. I was wrong. I won't lie, sometimes I really miss my hair but overall it isn't so bad. I invested in a great wig and most people can not tell it is a wig. I get ready much quicker now LOL. Losing the eye brows and eye lashes was much harder. I recommend going to a look good feel good session, there I learned how to disguise the eye brow and eye lash loss plus got some great cosmetics. My hair is growing back now and it is wild! Thick and curly~

coachvicky · December 2017

I said to my husband that my breasts were amputated but if I loss my hair, it would be my tipping point. I got a buzz cut and he used the gel caps on me.

For me, it was worth it. I did lose about 40% and that was hard.

I re-grew the hair I loss three times. First was baby fine. Second was white and curly. This is thick, wavy and silver. I still keep my hair short.

Yes, use dry ice. My husband bought it the night before chemo. My chemo was always early morning.

Remember to dampen your hair and change the part from time to time. I think if I had done this I may have kept more hair. My part permanently changed.

Best wishes.

Coach Vicky

Jackster51 · December 2017

I did not get my hair back after Taxotere 6 years ago..... :-(. So I would highly suggest cold capping!

Shay76 · December 2017

Hello,

I'm early in the stages of cold caps, but have learned a great deal through my own research and people who have been through it. I am currently doing 12 weekly taxol treatments, and have 2 down so far. I haven't lost anything but it's early (most weeklt taxol's are 4 in before it starts).Cold caps have the greatest success with taxanes chemo tx. Ladies on my fb group kept most of their hair, and what they lost wasn't noticeable. Less success with AC treatments, however it can be, just the percentage is less. You have to take special care of your hair, and the cold cap company you rent from will give you instructions on that. I rent from artic (seemed to include the most for less), but there are options out there. They are not cheap, but depending on income you many be able to apply for a subsidy that helps with some of the cost (hairtostay.com). The Rapunzel project website has a lot of great info on the different options and success rates. My husband goes with me to chemo to change my caps (you will need someone to do that for you). It is a procedure, so your person will have to be pretty dedicated in timing, rotating the caps, and checking the temp (mine came with a infrared thermometer). My infusion site does not provide anything for it, so we have a big cooler on wheels (provided by artic) filled with dry ice (we had to google to find a local place for that). They are VERY cold and do not feel good for the first couple of caps. Then your scalp numbs and it's not so bad. My first session, I was into cap 2 and seriously about to quit and then it didn't really bother me anymore. By my second round of chemo I knew what to expect so it was a lot better. Wear warm clothes and bring blankets. I wear a fleece, and bring 2 blankets (one of which is heated). I feel doing this for 10 more weeks will be worth it if I can keep my hair. It gives me a sense of control and also saves me from spending the next several years growing it back. Oh, and I didn't spend any extra time in the chemo suite, I think someone mentioned that. My husband puts them on before meeting with the doctor and premeds. I wear them for the chemo (an hour), Herceptin (40 minutes). We put a fresh one on going home, and continue them there for the recommended time at home. Usually it's 45 minutes before, during chemo, then 4 hours after. So by the time I finish my Herceptin, pack up, and drive home I have maybe 2.5-3 hours left. I just sit at home under a bunch of blankets, watch TV and get to be lazy for the rest of the time. You don't have to do that but I enjoy it!!

Jiffrig · December 2017

I did cold caps and still lost most of my hair. I was never slick bald but had to wear a wig after 4 DD A/C. I got a great wig, very similar to my hair in color and style and loved it. Wish I had known that it does not work with adriamycin. Since you are not doing taxotere you know you will get hair back. I wish I would have bit the bullet and gone bald, saved $$ and aggravation. It’s worth doing adriamycin though, those are the big guns!

dlk617 · January 2018

HI!!! I thought I would share my experience (2 cents) - as losing my hair was very upsetting to me when I found out I would need to do 4AC and 4Taxol. I paid a lot of money to have someone put my caps on and change them out every 24 minutes...It added a few extra hours to my chemo days (about an hour before and 4-5 hours after)

In retrospect, if I had to do over, I'm not sure that I would do it again. I'm fairly certain I would have been upset had I not tried it and learned for myself. It works for some and from what I've read it depends on where your hair is in it's growth cycle (not sure if this is accurate or not, as you hear a ton of information, tips, etc)

I did 6 out of 8 cold caps and I probably would have stopped after my second AC treatment, since I started losing my hair pretty heavily in certain parts, near my ears (I also have an abnormally small head, so not so sure the caps were fitted as close as they could have been- even with extra tight straps, etc.. I chose to continue with cold caps because my one daughter (was a tween at the time and seemed devastated at the thought of me giving up on my hair and not being able to control who knew about my sickness.. .. My hair was super long to the middle of my back/with blonde highlights and probably my best feature or so I thought)

So after a few more attempts, following every single rule so washing, brushing, taking vitamins, no swimming all summer- I stopped doing capping towards the end of my treatment- I guess for me I didn't expect so much hair loss and when I started looking in the mirror and feeling like I had a Tales from the Crypt mullet- I decided it was time, as I wasn't even sure my hair could be cut into any style post treatment that wouldn't look ridiculous.

I also made the mistake of not cutting my hair pre-treatment, as I was told I shouldn't because it would make my hair fall out quicker- not sure how true this is, but I did look pretty silly and it made it more heart wrenching to have super long hair and watch it fall out - much more traumatizing for me, perhaps if my hair was a more manageable length it would have been easier to deal with hair loss. Again this is just my experience and I hope it does work for many of you.. If you have any questions or want to ping, please do.. This is in no way a deterrent to anyone else, but simply my experience. Best of luck to you!!!

DK

ykh · January 2018

I had 4 DD AC + 12 weekly taxol and I used Pinguin cold caps. I lost about 40-50% of my hair overall (no bald spots). This is the toughest regime on the hair and the results vary. But I am absolutely happy I used cold caps! My hair started growing back in the middle of the taxol treatment. Cold Capping is not that hard and very manageable.

dawgette · January 2018

Hello Notinuse -

Thanks for the reply. After spending time with my family last week and seeing all the replies, even though most seem to lean towards CCC, I decided against it. I plan on skiing and getting out and won't have time to baby my hair. It's just hair and will eventually grow back. I will consider it my badge of honor. I completely understand why people would do it for their kids or work, or just because they LOVE their hair. I didn't have a real strong reason to go through the pain, cost, time consuming process. Some people have said it is easy, but 16 rounds of this is too much for me. We don't have dignicap in Seattle, so I would have to get 80 lbs of dry ice for every treatment. And.....there is no guarantee. I plan to have fun with this!

Thanks for your response.

dawgette · January 2018

Thank you Bellas Mom Too -

Your response was helpful and I decided against it for many reasons. I'm expecting to shave my head in the next 20 or so days when it starts falling out. The fiance has the electric razor ready. I plan to have fun with this.

dawgette · January 2018

Hello ykh -

I am soooo glad it worked for you. I decided to go the other way and not deal with it, but I'm glad to hear it can work for people doing 4 ADR-AC and 12 Taxol.

Thanks for your response.

Amelia01 · January 2018

I hope to be able to post a success story with the Dignicap but have only had it for one chemo (so far) and must admit it was more tolerable than I thought it would be. Sure, a extra two hours of capping after wasn’t fun but I hadn’t made any afternoon plans either.

I was told that it also protects the bulb so even if there is hair loss with the cap, the hair bulbs are usually saved so hair grows back quicker and in its normal cycle.

Odd thing is that I have bad hair - thick, curly but not pretty curls and it’s going grey so why I care to hang onto this mop is beyond me. I found a beautiful wig but shelling out 1500$ also doesn’t thrill me.

Maybe there is one aspect I need to be in control of, if possible.

ThankfulToday · January 2018

You can buy regular dry ice at the grocery stores that have fish displays. If you talk to the managers in those departments you'll find them helpful. I am also in Seattle.

ThankfulToday · January 2018

Cold Cap Therapy - I didn't want to pay the rental fees for the CCC so I made my own. I bought flexible ice packs and my husband helped me put them on my head 45 minutes before starting chemo. My nurse told me when to put them on so the timing worked. I didn't put it on until after the pre drugs. I had to help hold the ice packs in place while he wrapped my head with a fairly long open headband with velcro on each end which I made out of stretchy elastic material (kinda like stretchy webbing - old fashioned beach chairs webbing but stretchy) I bought the material at a thrift store so maybe try a fabric store. (The "headband" was about 3 feet long and 3 inches wide with velcro on each end - I used 2 of them. Yes it was very awkward and we could have used a few more hands but we did make it work.

I brought extra ice packs with me to chemo so I could change the packs three times. kept the "freezer" on my head for an hour after the chemo. I found that the cold did radiate so I didn't worry about every little spot on my head. I also could put my hand on the ice packs and move them a little if I felt a spot wasn't cold enough.

I had shedding starting at week 5 but I kept at least 50 - 60% of my hair and nobody knew I was doing chemo. People just thought I cut my hair. I cut my hair above my shoulders before I started chemo so the weight would not help it fall out. I washed it once a week, no brushing etc -

My chemo was Carboplatin and Taxel for 12 weeks with no off weeks. My cancer is TNBC.

CCC does not work for every type of chemo from what I understand but my Dr joked with me that frozen peas would probably work if cold was going to work for you - just get your head cold and keep it cold and it very possibly would work as well as the branded CCC.

My head stopped shedding about 2 months after chemo and the hair that did fall out is growing back.

The whole thing cost me about $200.00. And again - Yes, it was awkward to get them on and in the right place but we did it and made it work. Honestly, The cost of renting the CCC and the dry ice, was just out of the question.

I did take the temperature of my head a few times immediately upon removing the ice packs and it was between 37 - 40 degrees.

Moderators · January 2018

ThankfulToday-

Welcome, and thank you so much for sharing your experiences! It's so helpful to hear what works and what doesn't from members who've been there. We look forward to seeing you on the boards!

The Mods

Should I try the Cold Cap or go for a wig?

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